SAH - My Ironic Story

Its was January 19th 2015, I had been to the gym, then off to see a friend. Rushing about and running upstairs, I had a sudden pain the the back of my head which instantly became a sharp nerve pain in the front of my head. I felt sick, had a stiff neck. I knew it was a SAH. I'd worked on Neuro ICU for 7 years and did 3 years on the Neuro ward prior to that.

My then 17 yr old daughter drove me to hospital (i just couldn't ring an ambulance- the poor NHS is so stretched, omg). The ED doctor wasn't sure what to do.....I had no focal neurology, just a headache which had rapidly gone from intolerable to bearable in 2 hours. Nausea had gone but stiff neck persisted. She got the ED consultant, he told me I was paranoid because of where I worked. I was discharged home with migraine.

Over the next 4 days the 'migraine' hadn't improved. I saw a GP who said to see how things went over next few days! I went to work on the Friday night - was in considerable pain- but continued to look after my SAH patient throughout the night. I dragged myself out on Saturday night and drank to numb the pain....the next morning I had fuzzy vision blaming the booze.

Monday, at a course I fainted- overwhelmed by pain- my manager wheeled me upstairs to ED. A CT scan revealed nothing- by now I had blurred vision and incredible cheek/eye pain. I was given IV antibiotics and sent home with a diagnosis of sinusitis. 2 days later I couldn't lift my head off the pillow to attend my sons school play.

I phoned my ex and asked him to go....he came and saw how sick i was and took me to GP...I vomited in the surgery. I couldn't hold my head up and had double vision. He said for us to go ED....my ex drove me up. I couldn't walk, he carried me in....I knelt on the floor, head on the chair. A nurse took me to a trolley.

I awoke in re-sus following a seizure. One eye wouldn't open....I was going for a CT. A large SAH was revealed. A colleague recognised me and called one of the sisters where I worked....she came and sorted out nimodipine, antiemetics and catheterised me. I was admitted to the ward and had a coiling the following morning.

Being looked after by my colleagues on icu was amazing, they are brilliant nurses. I know how lucky I have been. I left hospital 10 days later with a complete ptosis and severe pain.

It took 3 months for my eye to open and the double vision to stop. In this time, I had moved forward with a man I had been seeing casually- he was my strength and became my best friend and the love of my life.

I forced myself to work the following month....

My 2 follow up MRIs have shown the coils are good and I have a tiny remnant and the neuroradiologist is perfectly happy with this.

Life has been ok (a house move, a new job I just didn't enjoy Neuro ICU anymore, two new stepchildren and, a massive court battle to keep custody of my children-as my ex tried to turn them against me, my eldest son refuses to see me still (since June 2015) but last month I was awarded full custody of the youngest two). I am thankful to be alive and try to be happy but my energy is easily sapped and I am reminded almost every day....

Today 20 months later. I feel fatigue. I have a new sensation of pins and needles in my right leg and hand and the pain in my face has returned although intermittent and mild, vertigo can be tough somedays, I seem to have periods of anxiety linked to extreme exhaustion. I gave up with my GP...who really couldn't offer any advice.

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Thank you for sharing your story .....what an absolute nightmare time you have been going through bless you, let alone recovering from a major trauma to your brain, but everything else you have mentioned ! I am not surprised that you are feeling how you are. You have had to be so strong and fight so hard that now your body has told you to slow right down.

Listen to your body and be kind to yourself Congratulations on being awarded full custody of your two youngest children.

Wishing you all well.

You have certainly come to the right place for lots of support and helpful information.

Look forward to hearing more from you and feel free to join in the daily banter in the Green Room, we are a friendly bunch.

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You think you are alone and you come on here and we are many who have gone through it.

I know this sounds selfish but I thought to myself "Win all these people have been through it so you are not alone" which was my cue to get up and start walking as OT's said I wouldn't. Getting there apart from backache.

You have been through a lot now remember to drink water, smile and no Stress Whatsoever !! (Neurosurgeon told me no stress) so I wish you a happy and healthy life and remember it is early days xx

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Its brilliant talking to people who get this prolonged illness, or at least its side effects.

I always wear a smile, sometimes i think thats why nobody understands the pain of the fatigue, they just dont see it.

Ive been having vertigo and pins and needles with eye pain this week which is scarey i know theres no point going to Drs they'll just say its part ot it......so ive phoned in sick at work ( only my second time in the 16 months ive been back)

Im not going to feel guilty. Im done with dragging myself through this. This week im going to be kind to myself.

Its ok to drink wine, isnt it? I use it medicinal to combat the pain of the tiredness.

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You had your sah just before me, mine was 10 Feb 2105. It was a NASAH with hydrocephallus and an EVD so no driving for a while. Sounds like you had a nightmare getting the diagnosis, just goes to show how wrong medics can be sometimes.

I too like a wine but can't drink much now without becoming a total amnesiac. My husband always has to remind me the next day that I've already told him stuff and I really can't remember conversations I have had too. I find if I drink lager it's not so bad.

Sometimes it really is just best to give in and take time for yourself. Hope this week gives you time to recharge your batteries and rest. The fatigue is one of those things that unless you have suffered from a sah is difficult to comprehend. I say to my husband I am not physically tired but exhausted mentally which does actually spill over to the physical side too.

Yesterday I ran 8 miles with a friend (we are in training for the Great South Run) it was a great run and I could have gone further and I was not too tired after. I spend 2 hours at work checking (I am a pharmacy tech) and it floors me. I have to take a break and be quiet for a while. It just shows that it's stuff that needs the brain that causes the fatigue.

Sounds like you have had a very hard last 20 months. Hope things are settling on the personal side now and that stress levels are coming down. There is no doubt that coping with stress post sah can be very difficult, I try and avoid it now - anything for an easy life!

Take the time for yourself this week and relax. Be good to hear more from you.

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Wow Clare, you are like superwoman! Cant believe you ran 8 miles.....just a year and a half after a NASAH. Go girl, be really proud. ?

I use to run but can't anymore, i dont like the sensation of my head bouncing about, probably coz i get vertigo.

I can walk miles though but a day at work and im fit for nothing in the evenings so i know what you mean about mental tiredness. ?

Did they ever find a reason for your bleed? Was it traumatic? Did the hydrocephalus self resolve or did you end up with a shunt? Although i had my first bleed on 19th January i got diagnosed on 12th February just two days after you- thats when i had the seizure in ED. I had my coiling on Friday 13th lol.

Homelife has really settled down the past 3-4weeks and im really hoping to marry my gorgeous man next year...so everything is looking rosey

It sounds like your husband has been supportive to you.

Im feeling a bit better today, the eye pain is quite mild now. Feeling a bit of a fraud but actually also feel a million miles away from normal, feel guilty laying on sofa and not being at work :/

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I know what you mean about a day at work though. I have had one of those busy stressful days today and am good for nothing this evening. In fact most evenings I just lay on the sofa resting my head, surfing and watching TV - that's when it's not a running night

I could feel my head getting woollier and woollier at work this afternoon and was glad when home time came. I need to learn to take time out when I feel like that but it's difficult when you are working as a team and want to get the work done.

They never found a reason for my bleed but the hydrocephalus did resolve so I didn't need a shunt. I just have the tell tale EVD dent in my temple, I think of it as my battle scar!

So glad you are making plans for next year, be something to look forward to. My husband was very supportive and still is though I think he gets a bit fed up with me constantly saying I am tired. My daughter has just moved to London and wants me to go and visit next weekend. I will go (by train) but I can't say I am really looking forward to it as after my working week (only 4 days) all I want to do is relax.

Don't feel a fraud being at home, use it as time to relax gather yourself. I phased back over a long period and now have Weds off as my recuperation day. I haven't had to have anytime off since but if I felt ill enough I would, life's to short to be a martyr for work.

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I hear so many stories of people having a SAH and being sent home with a migraine diagnosis. It would seem that they would err on the side of caution, but alas they do not. I don't know who made the decision to do the MRI on me when mine occurred, but I am thankful.

It sounds like you have a lot going on in your life and stress can be unrelenting. I am thankful that you have some family who will support you and that you have joined our "family" on BTG. This site can make tough days much easier, just form the love and care that comes pouring our of the computer screen.